Klonopin

Just tried my first 1MG of Klonopin on Saturday, and since then have had nearly complete remission of all CFS symptoms (Orthostatic intolerance, brain fog, anxiety, depression, anger). I have not since taken another one.

I'm asking if anyone knows why that would have such an effect on me and what it means for treatment?

Hi Christopher,
I began klonopin many, many years ago so my experience might be more muddied, but I think I can give some feedback. I noticed, very much by chance, that I experienced some improvement when taking klonopin for sleep and couldn't really understand why it felt like it helped the swollen glands, pain, fever, etc. For me I think it helps partially b/c I have been on it for so long and have built up somewhat of a tolerance and I think my body goes through a mini-withdrawal after about 15 hrs or so without it and then functions better once it gets its dose. However, I think it calms the nervous system neuro activity and benzos are the best meds at doing this. I don't mean to downplay the seriousness of taking them, just to state that objectively they are extremely good at this. Since my illness certainly looks and acts a lot like a neuro illness I think CNS hyperarousal is a big part of it--I mean the body's response is being caused by real problems, not an overactive amygdala response (this is just my opinion based on my experience) and though the klonopin doesn't treat the problem, it can quiet the body's response.

1 mg is sort of a big starting dose imo, though I think the dose for a male could be different than for a petite female. I began with either a 1/4 or an 1/8 of a pill per day, or p.r.n. at that time. That was part of what I liked about it, that I could vary the dosage easily, it would wear off in a reasonable amount of time and I had no unpleasant side effects.

I don't know what it's like to have CFS and not take klonopin, but currently the pros outweigh the cons. Also, trying to titrate off of the klonopin was disastrous (probably very much due to my illness), so I had to go back up to my normal amount (1mg).

Klonopin is one of only three drugs I've found helpful in my 20+ years of this disease. I took temazepam for sleep off and on for years, but several years ago finally relented to my doctor's suggestion and now take .75mg of Klonopin every evening. It helps with sleep, but mostly I find it useful for calming my brain's overreaction to, well, everything. It even lessened my chemical and food sensitivities.

It has a half life of 18 hrs, so isn't completely out of your system for 36 hrs. Hope you have continued success with it, Chris!

One of my kids has ME/CFS symptoms and has been ill since '89. She was very sick from '89 through '92. In that year she started taking Klonopin. I think she was on it for about 4 months when she had a complete remission of all symptoms. At the time she was on a lot of meds, which she then discontinued. For the next 6 years she was completely symptom free. In college she relapsed after a serious kidney infection and has not recovered. However, I never thought the Klonopin had anything to do with her recovery. But seeing your post, now it makes me wonder. I have just sent her a quick email. I am sure she will give it another try to see how it goes.

Hey guys...quick update. the positive effects definitely left me sometime last night. So I woke up this morning with my old symptoms (pounding heart, anxiety, worry, PEM). I was able to get through the day ok, and just took a .5mg tablet a few hours ago, with again all of my symptoms, physical and mental, improved. I really don't know what to make of it, but it is very beautiful to feel, if only for a short while.

Hi Chris, I'm glad you you brought this up. I take something similar ( Zimovan ) not at night but throughout the day.
My neurologist pointed out that I'm in a constant state of CNS hyperarousal. Without them I'm in hell.
I must admit that although they are very addictive i have been taking them now over 10 years.
I'm not going to stop as all the original symptoms (pain, fatigue, disorientation, light intolerance and many more, will return within hours and am not going there again.
Its amazing how one tiny little pill can make so much difference.

Chris,
I have been taking klonopin at night for sleep for 10 years. The neurologist I went to at Emory Clinic in Atlanta Ga prescribed klonopin. When I have the PEM really bad I can take a half or sometimes a quarter and helps take the edge off the pain.
It helps tremendously that tiny little pill.

There is something called excitotocixity, I believe this is the most often used method of killing neurons experimentally. Clonazepam also gives me more power and less ataxia and it has nothing to do with anxiety or panic attacks but I try to avoid it as much as possible.

<snip>
I noticed, very much by chance, that I experienced some improvement when taking klonopin for sleep and couldn't really understand why it felt like it helped the swollen glands, pain, fever, etc.
<snip>
I don't mean to downplay the seriousness of taking them, just to state that objectively they are extremely good at this. Since my illness certainly looks and acts a lot like a neuro illness I think CNS hyperarousal is a big part of it--I mean the body's response is being caused by real problems, not an overactive amygdala response (this is just my opinion based on my experience) and though the klonopin doesn't treat the problem, it can quiet the body's response.

1 mg is sort of a big starting dose imo, though I think the dose for a male could be different than for a petite female. I began with either a 1/4 or an 1/8 of a pill per day, or p.r.n. at that time. That was part of what I liked about it, that I could vary the dosage easily, it would wear off in a reasonable amount of time and I had no unpleasant side effects.

I don't know what it's like to have CFS and not take klonopin, but currently the pros outweigh the cons. Also, trying to titrate off of the klonopin was disastrous (probably very much due to my illness), so I had to go back up to my normal amount (1mg).

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Having dealt with ME for 16 years and only having taken Klonopin for the last 18 months, in my case the sleep and neural issues appear to be closely intertwined and the klonopin helps in a synergistic manner with both.

For 12 months I was taking the klonopin to quiet peripheral neuropathy and pain that would come after having pushed myself into a crash. Occasionally, I was also taking it when I woke in the middle of the night with neural pain, which almost always came after having done too much the previous day. Prior to trying klonopin, if I woke with neural pain at 3 am that was it. There was no getting back to sleep. The lack of sleep would then lead to significant fatigue and in turn an ever increasing spiral of neural pain.

Over the last six months, rather than suffering through a miserable night and next day (and then next several days - which often ended with me taking .25-.5mg of klonopin in the late after noon or evening when I just couldn't stand it), I now will take .25-.5 mg of klonopin shortly after waking in the middle of the night.

The effect has been that I get another 4-5 additional hours of sleep and the next day is immeasurably better than it would have been. I find that if I use the klonopin to get back to sleep the effect is significant. It seems to me as though the sleep is the key and klonopin is a tool to quiet the neuralgia making the sleep possible. I've even found that when I use the klonopin in this manner, I'm not just more comfortable, I can do a little bit more before the neural symptoms start to flare.

As for addictive effects of klonopin, they can be significant. The potential for developing a tolerance is actually the bit that concerns me the most. If that happens, you begin to need more and more to get the same effect and eventually its possible that what ever ability your body had to quiet the pain will disappear and you'll need it just to get to where yo uare now without the klonopin. Long term studies have found the potential for tolerance at doses over 0.5 mg/day.

Years before getting ME, I worked in a Univ Hospital Pain Clinic for two years and on a daily basis we dealt with patients who had developed tolerance to their meds. You don't want to go that route. Over time, many of the Pain Clinic patients had escalated their doses to levels that would kill a horse and they still couldn't get relief. That in turn lead to forging scripts, stealing meds, street use and financial problems. It doesn't happen to everyone but it happens often enough that it's something to be aware of.

In the last six months, having changed the my pattern of use, my total weekly consumption (which was on the rise) has gone from about 3.0 mg/week to 0.25-1.5 mg per week (with the higher use being associated with a much higher level of activity - and subsequent neural pain and sleep issues). Now, I almost never need an afternoon or evening dose just to deal with the pain.

In the terminology of pain medicine it's called getting ahead of the pain as opposed to chasing the pain. Pain leads to neural excitation which subsequently lowers the bar for the same stimulus to cause pain at a lower level. Meds are great if used as part of a plan to get ahead of the pain and sometimes meds are needed for a "pain holiday" when you've been driven to the end of your ability to cope. I've always given myself permission to use meds for that type of holiday.

For a long time I have been thinking if trying klonopin. Please also post any negative experiences. Ty for starting this thread Chris

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Well, you asked for it. :Retro smile:

Yes, klonopin can help, or seem to help to greatly relieve some of the most annoying symptoms of ME/CFS. It was the first drug prescribed for me back in 1998, and within a day or so of taking it, I thought (like Chris) that it was a miracle drug. Seemed too good to be true. It was...

I would just caution that if at all possible, do everything you can to try not to take it on a daily basis. Or at the very least, take it for maybe 2-3 days, then skip a day, so that tolerance doesn't build up. I was able to do this for several years, but eventually needed it on a daily basis (by 2004), which leads me to the one of the main downsides of klonopin: It temporarily helps dampen the excitoxiticy (sp?), but doesn't address WHY the HPA axis is so out of control. In other words, it doesn't get to the root cause(s) of the problem...just bandaids it, while the patient develops a tolerance to the drug...which can be very, very difficult to taper off of.

(I got off the "k", 2 years ago, and have been doing a valium taper ever since (per the Ashton protocol for benzo withdrawal), and still suffer side effects (tingling, agitation, increased anxiety, etc.,) whenever I try to cut the dose by more than 10%. I've decreased it quite a bit, but still have to go very, very slow.)

The other problem unique to klonopin, is that it is the ONLY benzodiazepine that has ANEMIA, LEUKOPENIA, and NEUTROPENIA as "side effects". The only one. How can our immune systems function properly if we develop anemia, or low white blood cell counts?

I convinced a doctor to prescribe Klonopin for sleep problems back in 1991, after reading that Cheney had success with this drug. I have been taking it ever since at bedtime. Sometimes I take a tiny sliver if I am having particularly bad brain fog during the day.

Sometimes I need less, sometimes I need more. Generally I'm OK with 1-2 mg. I have tapered off to .5 mg at times.

I haven't noticed any tolerance or need for a higher dose (except during times of stress-- my mother was near death this spring so I did need more).

My experiences are mixed. It was good at first but I seemed to develop tolerance very quickly, I actually ended up with less energy - i don't know if this is a decrease in motivation, i was always high motivation and would always push myself - I know i put on weight fast with it so there is a metabolic symbiosis. That said it is the best thing I ever took for Interstitial Cystitis pain (not the actual reason i took it) and I have even been able to start drinking coffee on it. It is an absolute devil to stop taking for me though, people say this is just the symptoms coming back but I really didn't feel that, to me it felt like benzo withdrawal I am back taking two a night every other night and zopiclone in between. I am trying LDN at the moment plus other supps so don't want to make that any harder on myself, i don't know if I would have started it knowing what I know now regarding ME but conversly may have for IC.

OK My story with Zimovane ( zopiclone ). 20 years ago i became ill . Spent the first 10 years in agony. Could not find any doctor nor specialist that could understand (why i was in pain) to be able to help me.
Finally found an understanding Dr who prescribed Zimovane to calm down my CNS so i could sleep. That's when i found that my CFS symptoms were remarkably improved and especially the pain which i had suffered with for the previous 10 years. In my case the addiction to Zimovane pales in significance compared to pain.
I understand that addiction can happen in a good percentage of people, but if it is improving there quality in life , what's the problem.
Until ME/CFS is taken seriously, we the neglected people will have to make hard choices. If that means becoming addicted so be it.
Just to make it clear now i dont use Zimovane to aid sleep. I use them during the day and they dont make me sleepy. It helps to reduce the pain.

I've only ever taken .5mg of Klonopin at any one time. It puts me to sleep but the next day my brain fog is better. The sensory overload that I would get outside my home is helped but my other ME symptoms (mainly viral) are unaffected.

The doctor who prescribed this for me is not longer working in the UK but I was able to taper off with no ill effects.

Thank you for sharing your experiences, good and bad. Seems it helps many, but some develop a tolerance while others do not. It does seem too good to be true, and only masking symptoms caused by something else, so I will pursue the Klonopin as well as other treatments so that one day I might not need the Klonopin. However, if it helps, I am not going to forego it because I may or may not develop a tolerance to it.

In fact, I develop a tolerance to Xanax extremely quickly. If I take the same dose for a few days, I feel absolutely nothing from it. We will see if the same holds true for Klonopin.

I try to use clonazepam only for special situations, e.g., you are sick but suddenly circumstances dictate that you go somewhere and do something. It seems that benzodiazepines slow recovery from neurological illnesses but on the other hand it may be true that benzodiazepines have been unjustly demonized by manufacturers of novel psychoactive drugs but it may be more of interest for people with primary "mental" illness.

And one important point: I was many times happy that I had certain amount of clonazepam immediately available. Many times it happened to me that I had bad reaction to some drug. These were really unpleasant experiences that looked like hypertensive crisis, hyperpyrexia or seizure and only sufficient amount clonazepam saved me from urgent visit of hospital (but not always).